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Introducing myself to the group
April 21, 2023 04:42PM
Hello all. I have been "lurking" here for a while now. Here is my story. I am a 68 year old male in pretty good health. I lift weights, ride my bike, and walk daily. In the summer of 2020, I started experiencing "thumping" in my chest and felt tired all of the time. In October 2020, I was diagnosed with persistent atrial fibrillation. I got an EP and he put me on flecainide for rhythm control and did a cardioversion. I went into NSR, but it only lasted for about a week. Since I was not too symptomatic at that time, my EP dc'd the flecainide and started metoprolol for rate control. He later added diltiazem. I did OK for a while, but I hated the meds. They made me feel almost as bad as the afib. In May of 2021 I went to the hospital to start dofetilide (Tikosyn). I went into NSR after the second dose. I remained in NSR for about a year, but then I started having increasingly frequent break through afib episodes. These episodes were pretty intense, and I was very symptomatic (strong palpitations, shortness of breath, anxiety, etc). So, I had a radio frequency ablation done in June of 2022. The ablation really helped the afib a lot, although I had some SVEs and frequent PVCs afterwards. The SVEs started calming down over the summer until I had abdominal surgery in October for a hernia repair with general anesthesia. Two days after the surgery, I started having frequent PACs along with the PVCs. I started magnesium taurate in December and it has almost totally eliminated the PVCs, and the PACs eventually went away. In January, I met with my EP and complained about feeling generally spacey and low energy with a persistent, mild headachy feeling. I had experienced this for some time, but always attributed it to the afib. But since this feeling persisted after my rhythms were relatively OK, I was thinking it was medication side effects. My EP agreed and had me hold 2 doses of dofetilide to see if that helped. After holding the second dose, I went into afib, but converted to NSR after resuming the dofetilide. Next, I tried holding the diltiazem and after 2 days, I felt better, but then the PACs and SVEs came back with a vengeance (I have a Kardia). So now I remain on dofetilide, metoprolol, and diltiazem. I am doing well rhythmically, but still have the spacey, crappy feeling that I think is medication related. My EP said that he would do a second ablation if I want to get off of the meds. I don't want to do anything this summer, because I want to enjoy the season. He said he could do another radio frequency ablation this fall or if I wanted to wait, the pulse field ablation would be available next spring. I have some decisions to make. Sorry for the lengthy diatribe. I appreciate this site.



Edited 1 time(s). Last edit at 04/23/2023 11:17AM by FibberMcGee.
Re: Introducing myself to the group
April 21, 2023 05:56PM
You may have come to a decision point on future treatment as EPs have varying levels of skills with ablations—something that many here have learned the hard way after several failed ablations. So, another possibility would be to go to one of the handful of super-skilled ablation EPs. Their success rates are markedly better. Yes, it means travel, but getting out of the Afib cycle is priceless. And getting of drugs is priceless too.
Re: Introducing myself to the group
April 21, 2023 08:36PM
Thanks for your reply. The reality of financial considerations and the logistics of travel mean I have to stay closer to home. It is what it is. My EP does about 5 ablations weekly. I am a retired RN and I asked a lot of friends in the medical field around here who they would use, and my EP was the unanimous recommendation. I like him a lot. He responds quickly to my texts and e-mails and reviews all of the Kardia EKGs that I send him. He actively listens to my concerns and takes what I have to say into consideration. I feel lucky to have found him considering where I live.



Edited 1 time(s). Last edit at 04/21/2023 09:25PM by FibberMcGee.
Re: Introducing myself to the group
April 22, 2023 03:58AM
I think any EP who is favoured locally by people who oughta know is worth a second shot, especially if you feel confident in him and like him as a person. My own EP is in the category, nice enough, if all business, and he is highly recommended by the nurses who prickle a bit when he's around. His first effort last July didn't take, and he agreed to try once again. I'm happy to report that the second attempt in mid-February gives all indications of having been a success. Even the very best of EPs will have to admit that their first ablations have a failure rate of at least 20%. Mine admitted to 35%, and that is where I found myself after Attempt The First.

If this next one doesn't take, then by all means start the laborious process of finding someone else whom you trust and who is extremely busy. The three or four most senior members here work hard at convincing people to make sure their EP is highly experienced, busy, in high demand, and who has a high rate of success.
Re: Introducing myself to the group
April 22, 2023 03:29PM
Thanks for your response. My EP has about a 70% success rate (according to him) for first ablations, which is pretty good for persistent afib. I feel that my ablation was mostly successful because I was having afib episodes even with all of the meds before the ablation, and I have had no afib while on the meds since my ablation. The only afib I have had since my ablation was when I tried holding the dofetilide. Hopefully, that means a "touch up" would be simple and successful. I would just like to be med free. I am tired of the side effects. But it is better than afib.



Edited 3 time(s). Last edit at 04/22/2023 03:34PM by FibberMcGee.
Re: Introducing myself to the group
April 22, 2023 04:10PM
"Success rate" regarding ablations is a floating notion. When one takes into account patients being atrial fibrillation AND meds free for at least one year following the procedure, it's considered a success.
I'm among those here having "learned the hard way" (as Daisy wrote here above) what a success rate may mean or not. In other words, count me in the 30%.
Re: Introducing myself to the group
April 23, 2023 11:29AM
I actually feel pretty good these days, except for what I feel are med side effects. Sometimes I wonder if I am just expecting too much, especially compared to what a lot of people here go through. Afib is a weird thing. I am a retired RN who worked in geriatrics and it seemed like all of my patients had a dx of afib. I never truly understood what they were going through. Now I have learned more than I ever wanted to know about it. LOL. Every time my heart "hiccups", I notice, and I think "Oh great. Here I go again." This site is great because I know you all "get it".
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